Last week I received an email from Stephen Drake, research analyst, for Not Dead Yet. He wrote that he and Diane Coleman might be on a syndicated television program called Doctor Oz. The subject was assisted suicide, not exactly the usual afternoon television fodder. To say I was skeptical would be too generous—daytime television is not exactly known for quality programming and I had never heard of Dr. Oz. As it turns out Drake and Coleman could not appear. I decided to attend knowing some members of Not Dead Yet would be present as well. I had three concerns: first, the daytime television model is for tear jerking, maudlin depictions of any issue and this would undermine any serious discussion. Second, would the show use people with a disability as mere window dressing for the viewing audience. Third, would the show be grossly biased. My concerns were well placed. The taping of the show was in my opinion a train wreck. It was an amazingly horrible experience. All my concerns came to fruition. In fact I would go as far as say the show, its host and producers were unethical.
As part of the expert audience, prominently sitting in the center of the studio, I did not say a word. It was very clear from the opening that my views were not valued. Yes, I was indeed window dressing. The so-called expert panel was hopelessly biased in favor of assisted suicide. Any opposition to assisted suicide was token at best—the minimal required that gives the appearance of being unbiased. This role was performed, scripted perhaps, by Keith Ablow who seemed to delight in upsetting people. The audience became hostile to any semblance of opposition to assisted suicide and was vocal about it. Worse yet, they used a highly emotional, think tear jerking, style to move the audience. The message was clear: disability is a fate worse than death and that assisted suicide is the most humane thing available to us. Out of the goodness of society’s collective soul the terminally ill and all those suffering should be put out of our misery.
The taping of the show made me feel like I was in a time warp—think Jerry Lewis telethon at its worst circa 1960. I fear I witnessed a raw new world emerging that I suspect reflects middle American values. It was ugly and I was forced to envision a world in which the ADA was never passed into law, disability rights did not exist, the medical model of disability was the only model, and equality was given out in small doses to appease pesky crippled people and make the almighty normal bipedal humans feel better about themselves. This ties directly into the push for assisted suicide laws and the serious threat such laws are to those with a disability and other marginalized people whose life is not valued.
I know daytime television programming is about entertainment. A sober and detailed discussion was not what I expected. But I had no clue just how bad the show’s taping would be. If possible it set an all time low. It far exceeded the very worst I could have possibly imagined. In this regard, Stephen Drake’s post, “Media Alert—Looks Like Dr. Oz is Planning Slanted Show on Assisted Suicide”, at the Not Dead Yet blog was prophetic. Most of the expert panelists were in favor of assisted suicide. Little time was devoted to rational reasons why such laws are in fact dangerous. Montel Wiliams, vigorously for assisted suicide legislation, exemplified the dichotomy between those for and against assisted suicide laws. Advocates for assisted suicide used highly emotional arguments that were very effective and touched the hearts and minds of those in the audience. Do we have the right to die was Dr. Oz’s refrain. The precious little time allotted to those opposed to assisted suicide were used as the veritable straw man--the downer who poured water over the parade toward assisted suicide legislation.
I have thought a great deal about what took place at the taping of the show. It is clear to me now that the show was well scripted. A very clear plan existed. The emotional argument for assisted suicide was to be pushed as hard as possible. This would whip up the audience and lip service would be paid to those opposed to assisted suicide. The audience reaction would be visceral and nasty to any nuance or balanced point of view. The goal of the show was to illicit a strong emotional response. And here is where I think the host and producers were unethical. The star of the show—a deeply depressed black woman with ALS accompanied by a home health aide, her two children, sisters and mother. This woman was used, exploited really. She was the archetype for why assisted suicide legislation should be passed into law now. She was portrayed as trapped in a body that was failing and would continue to fail. Huge photographs of her in an athletic uniform were used to juxtapose her sitting in a wheelchair, respirator dependent-a fate worse than death. How could society be so callous as to deny a release from her suffering. The host ever so sincerely asked her children would they support her mother if she wanted to use assisted suicide. Tears flowed, the audience was broken hearted and angry. Let this woman poor die. Pan the dejected audience, go to commercial, be sure to include other people with a disability in the camera frame.
The thought that I was a part of this show makes me feel like my humanity was violated. I am also deeply worried. There is a serious push to pass assisted suicide laws in the Northeast. Shows like Dr. Oz will surely be used by well funded groups like Compassion and Choices when they give presentations. The visuals and emotional power of such tear jerking stories cannot be dismissed. It is powerful stuff. It is also grossly misleading. While others will be moved to tears this is what I was thinking; how many people with ALS, in the exact same condition as the woman on the show, are content and leading rich and full lives? I would venture to guess the vast majority. I am not dismissing the serious nature of ALS—it is an inevitably fatal condition. But why is it this woman that appeared on the show is applauded for wanting to die and not adapting to her disability? She is the tragic hero while the person with ALS and all those who adapt to disability are not supported or given any respect. Social supports for people with a disability that want to live a life that includes the mundane, a job, family, access to mass transportation and a decent home are given begrudgingly. These people are difficult, a drain on the country’s financial resources. No wonder I have not felt equal since I took my last step when I was eighteen-year old.
What the audience failed to learn was the laws for assisted suicide in Washington and Oregon have taught us that people do not choose to die because they are in pain. And the show clearly led people to believe people with a disability are in pain and hence should have the right to die. I believe in the exact opposite: we all have the right to live. The reality is people choose to die because they believe they have no dignity and fear being an economic burden on their loved ones. This is not a failure of the medical establishment (we are all going to die afterall) but rather a social failure. We fail to support the vulnerable. And like it or not I am part of that vulnerable population. Many good things have come as a result of my paralysis and vulnerability. I know that dignity and quality of life are extremely subjective concepts. I also know people see me and think they would rather be dead than paralyzed. Some are even willing to share this sentiment with me. Thus I am no different from any other person with a disability. And we people with a disability desperately need to get our act together. Show like Dr. Oz are misleading and dangerous. Our voices need to heard, our existence valued.
Bill, your column highlights one of the symptoms of a continuing problem- society doesn't respect people who are different. Instead, it fears them, which is why the show was opposed to your views. Those people were clearly terrified of you, & of all people with disabilities. Some people have very small minds, & even smaller imaginations, so they can't imagine the life of a person with a disability as a positive experience; they're shocked to their foundations at the very idea, & not only that, they're afraid, & what they fear, they hate.
ReplyDeleteSociety must learn to not only accept, but embrace, all people who are different in some way, including people with disabilities. It must realize that different is good.
The reality is people choose to die because they believe they have no dignity and fear being an economic burden on their loved ones. That, in my health, is my greatest fear for the future, that they would attempt to take care of me, with their own futures being compromised. Of course, I'd do it for them, it's only money. I don't know why the thought bothers me.
ReplyDeleteThe burden of medical expenses the most frequent cause of bankruptcy (62%), with 78% of those people having insurance, according to a Harvard study. (http://finance.yahoo.com/banking-budgeting/article/109143/top-5-reasons-why-people-go-bankrupt?mod=bb-checking_savings)
Dr. Oz, Oprah, Dr. Phil...all birthed by the same industry...entertainment. They all just talk, none has real understanding, real empathy and each has a myopic view of reality. I'm not sure is Dr. Oz knows anything about the nature of disability. I agree with you fully...I'm tuning into Judge Judy instead for my hour of lunacy.
ReplyDeleteUsethebrain... Economic ruin is the thing all but the wealthiest Americans worry about at the end of life. The stats you refer to are sobering. It is just wrong.
ReplyDeletePhil, I had exceedingly low expectations. In retrospect the show was scripted to use disability and one person with a disability as a tear jerking story line to push forward an assisted suicide agenda.
Cait. There was visceral hatred in the air that was indeed based on fear. Stunning to me but it cannot be ignored. If anything good came from the taping it is that I saw just how feared and despised people with a disability are. It was not a day I will soon forget.
Of course we all have the right to live. Do we not also have the right to die on our own terms, when and where we want to?
ReplyDeleteIf someone with ANY disability would rather die than live on with it, is that not their right, their choice, their decision ..... not yours?
Dowz, We have the right to die without assisted suicide legislation. Any person can choose to forego life saving treatment. In part, this is what palliative care provides. We need not advocate assisted suicide that puts many vulnerable populations at risk. As many have postulated when does the desire to die become the duty to die?
ReplyDeleteMr. Peace, please keep in mind that the audience could have been selected for their lack of understanding and empathy. There will always be a percentage of people who are just jerks and hate everyone else, but most of us know someone who is disabled. Why would we hate people we know?
ReplyDeleteI think more than fear and hate, you should work to fight apathy. Many of us should know better and just don't think. Haters always hate, but the distracted and can be brought to focus.
Carrie, Thanks for your comment. I know nothing about how an audience for a day time television show is selected. All I can do is report that the audience on the day I was present was shockingly hostile. I agree education is the key to changing people's attitudes. I would simply posit what is taking so long in terms of disability rights? The last forty years we have enacted one law after another designed to empower people with a disability. I see little change and encounter bias and bigotry on virtually a daily basis. I read story after story in the mainstream media that demeans and disability rights. Our Mayor states accessible taxis are a danger to the non disabled. And do people really need to have some connection with disability or a person with a disability to respect their rights. Why can't we all simply acknowledge and value the ADA, the last great ciil rights legislation we have passed into law. As for apathy, I have been fighting that since I was 18 and yet I have no idea if I have accomplished a thing.
ReplyDeleteThank you for this article. I'm a nurse who works with the disabled and non-disabled. And you know what? People are about as happy as they make up their minds to be. Physical ability doesn't seem to enter into it.
ReplyDeleteOf course, you have to keep in mind alterations in brain chemistry that could cause depression, or someone who is still reeling from a recent loss. But in the normal day-to-day life, people either make the most of their opportunities or they don't.
It seems everyone is forgetting that the current laws require you to be diagnosed as terminal with LESS THAN SIX MONTHS TO LIVE. In addition, the person must request three separate times to die by their own hand. What risk is this to anyone that doesn't want to die and why should someone that does be forced into a painful or humiliating death? I'm disabled and do not fear this legislation as it is not available to me, I wouldn't request it, and do not qualify. Please educate yourselves on how these laws work. No one is going to force you into using this.
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